Part of A Practical Guide to HIV Drug Treatment for People Living With HIV

2011

In a Capsule

Your doctor is your most important healthcare provider, but there are many other people who can help you, from nurses to pharmacists to counsellors.

Do your best to find a doctor who has experience in caring for people with HIV.

Good communication is essential for a good relationship with your doctor. We suggest a few tips and tricks that may help.

Your doctor, and your relationship with your doctor, will play a crucial part in your care. You will likely see your doctor regularly, and together you will chart the course of your HIV treatment and care. Because you'll be working closely together, try to find someone who is knowledgeable and who you can trust and be open with.

Some people see a general practitioner (GP) or family physician who has experience in HIV and can treat their HIV infection along with other medical problems they may be experiencing. Others see a specialist in infectious diseases or immunology to treat their HIV, while their GP deals with problems that are not related to their HIV.

Ideally, you will want to choose a doctor who is experienced in treating HIV and who takes the time to stay up-to-date on all the latest information. In larger cities, it's possible to find a family physician with expertise in treating people with HIV. Unfortunately, in some parts of Canada, it is difficult to find a doctor knowledgeable about HIV care. In this case, try to find a doctor who is willing to work with you to learn about HIV. Your local AIDS service organization may be able to suggest a doctor in your area who has some experience caring for people with HIV. CATIE can also provide information for you and your healthcare team. Give us a call at 1-800-263-1638 or visit us online at www.catie.ca to find out how we can help.

I first met my new doctor when my original GP, who had lots of experience with HIV, unfortunately passed away. I was his first patient with HIV. In that meeting, he said, "It sounds like you'll be a challenge to work with, but I'm up for it." And he has been.

-- Randy

If you have the option of choosing between doctors, consider interviewing them and asking them about everything that's important to you. You definitely want a doctor with whom you feel comfortable and are able to talk freely, and one who will answer your questions respectfully.

After you find your doctor, remember to keep the lines of communication open. Communication works best when there is mutual respect. You want your doctor to respect you, so it makes sense that you approach the relationship with respect too. Here are some other suggestions for working with your doctor:

There are several things you can do between visits: keep track of the symptoms or side effects you experience, write down questions you have for your doctor, and keep note of things you need to ask during your next visit. The Personal Health Record has spaces for all of these issues and more.

When meeting with your doctor, remember that there are no stupid questions. If there is something you don't understand, say so. If your doctor is confusing you with medical jargon, ask her or him to explain things in terms you can understand.

When any treatment is recommended, ask for a clear explanation of why it's being recommended, exactly what it will involve, what kind of results you can expect, what any possible side effects might be, and if there are alternatives to consider. This will likely work best if you can make your doctor feel that you are asking because you would like as much information as possible, so they know you want to work together and are not challenging them or being hostile.

Because the amount of information your doctor gives you may sometimes seem overwhelming, you may want to bring along a family member, partner or friend who can help remember or record what the doctor is saying. You could also bring a notepad and pen to jot down notes -- or even a tape recorder or an MP3 player with a "record" function. Most doctors don't object to that; just ask them first.

Your doctor may not have enough time to answer all your questions in a single visit. If so, don't skip anything; make another appointment or ask your doctor if it's possible to make a longer appointment the next time.

My traditional healer has helped me understand more about my illness by applying it to an Aboriginal context and relating HIV to the medicine wheel teachings. When I combined Western medicine with traditional healing, I stopped getting the side effects.

-- Rod

Beyond Your Doc

Your healthcare team doesn't end with your doctor. Your clinic may have nurses on staff, as well as other professionals, like social workers and counsellors. These people all have valuable skills to contribute to your care and can often give advice on practical matters, like covering drug costs or taking your medications. What's more, they may have more time to talk to you. For example, your nurse may be able to answer a quick question when your doctor is swamped.

You will also be seeing a pharmacist whenever you go to pick up your medications. Because pharmacists are generally more available than doctors, many people with HIV rely on their pharmacists for information about HIV and their treatment. Pharmacists can help you keep track of your drugs and avoid allergies or interactions between drugs. To avoid drug interactions, it's best to get them all from a single drugstore, especially if you are filling prescriptions from more than one doctor.

Pharmacists can also provide useful suggestions on how to take your drugs regularly without missing doses. Pharmacists can also help you get your drugs paid for by government programs and insurance companies.

Find out what these health professionals have to offer so that you can get the most out of your team. If a lot of people are involved in your care, make sure important details don't slip through the cracks. The Personal Health Record can help you keep track of important information about your healthcare team and your treatments.

This article was provided by Canadian AIDS Treatment Information Exchange.
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